Waiting for lung transplantation: quality of life, mood, caregiving strain and benefit, and social intimacy of spouses

BACKGROUND: The emotional and physical well-being of lung transplant patients is enhanced by the availability and stability of a primary caregiver. METHODS: We describe the quality of life (QOL), mood, caregiving strain and benefits, and social intimacy of 73 lung transplant caregivers who completed the QOL Inventory, SF-36 Health Survey, Profile of Mood States, Caregiver Strain Index, Caregiver Benefit Index, and Miller Social Intimacy Scale. RESULTS: Clinically low QOL was reported by 17.8-35.6% of spouses. Relative to a normative sample, spouses reported significantly lower physical (z = 4.01, p < 0.001) and emotional (z = 7.01, p < 0.001) QOL. Over half (56.2%) had clinically elevated caregiving strain. Heightened physical strain (80.8%), inconvenience (79.5%), feeling confined (72.6%), feeling upset that patient has changed so much (69.9%) contributed most to caregiver strain, while discovering inner strength (60.3%), support from others (53.4%), and realizing what is important in life (42.5%) were noted caregiving benefits. Higher caregiving strain was associated with more mood disturbance (r = 0.42, p < 0.001), lower emotional QOL (r = -0.39, p < 0.002), lower social intimacy (r = -0.37, p < 0.002), and longer disease duration (r = 0.55, p < 0.001). CONCLUSION: Spouses of patients awaiting lung transplantation may experience QOL deficits and high caregiver strain. Interventions to improve QOL and reduce caregiver strain are needed.